Jay sent me a picture from his cell phone. He captured him and Andrew at the top of the Alpine Slide. They are both grinning, their two tanned faces bisected by the gleaming white of their smiles. The sky is blue behind them. I peered at the picture closely. I was happy for their happiness, glad that my husband and son were enjoying a sunny day on this first leg of our vacation. However, I was struck by the contrast between the sun-dappled blue of the picture and the gloom I’d imposed in my basement guest bedroom.

I keep reminding myself that I should be happy that I have recovered enough even to be on a family vacation. For the first time in a very long time, the three of us went out of town with no other purposes than to have fun, take a break from our routines, and enjoy one another’s company. For once, we’re not structuring a trip around a doctor’s appointment. We’re heading to Chicago tomorrow after spending a few days in Denver.

This trip marks many milestones. My neurosarcoidosis has abated enough that I was able to ride in the car for the twelve hour drive from Helena to Denver. Although I am not yet able to drive, I wasn’t throwing up from the vertigo my disease has caused in greater and lesser degrees for the past three years. Just last year, I would have needed to blindfold myself to prevent the moving landscape from triggering the vertigo. Plus, my immune system has recovered enough that flying for non-medical purposes doesn’t seem too irresponsible. When I was getting chemotherapy every other week, I wouldn’t have risked boarding a crowded airplane for any trip that didn’t bring me to a doctor.

I’m not as healthy as I’d like to be, though. The drive to Denver didn’t bring on a crisis, but it did increase the vertigo and head pain. At the end of each day’s drive, I needed to take pain medication, lie down, and pull a pillow over my head to mute the sounds and light that exacerbate the vertigo. Also, the long drive left me tired and drained. I hadn’t expected that riding in the car would make me feel wrung out and wobbly, as though I’d exerted myself mightily.

I’ve been looking forward to this vacation for months. I hadn’t seen my brother and his family for years. I’d been too sick to visit them either at their home in Denver or when they came to Montana to visit my parents. As for Chicago, I’ve wanted to revisit the city where my grandparents lived as adult—as well as to explore this mostly unfamiliar city with Jay and Andrew. I knew that I wouldn’t be able simply to cut away the threads of illness that try to tether me. (I’ve learned too many times that trying to “power through” my sickness often backfires. Pushing myself— by pretending I can do as much as I used to—makes me sicker.) But I anticipated a certain level of functionality.

So far, this functionality has eluded me. Five years ago, I would have expected myself to go for long hikes, perhaps whip up some Thai food for my brothers’ family, and certainly accompany Jay, Andrew, and Andrew’s cousins to unique, kid-friendly places in the Denver area. Five years ago I would have forced myself to do these activities, no matter how much my head hurt or how fiercely the world spun. I might have made it through the hikes, to the end of an elaborate dinner, and to the amusement park—if I were lucky. Several years in Chronic Town have forced me to acknowledge that I’ll pay the price for ignoring the strictures of illness. For instance, I understand that if I were to put myself through the paces of my expectations, I might rupture my ankle ligament for the third time. Or, I would bust another bone that’s been hollowed out by the disease. And if I made it to the amusement park, I’m pretty sure that one ride down the Alpine Slide would kick my vertigo into an obscene gear.

So, rather than wind up injured or in the hospital, I decided to lower my expectations. What is important? Am I taking this trip with Jay and Andrew so that I can ride down a steep rock slope in a modified sled? Have I been carefully building up my strength and my health so that I can destroy it on a hiking trail? Do I need to be as tough? I hate backing down. Giving in just a little can feel an awful lot like I’m quitting. And I despise quitting. All those years as a competitive athlete make it harder for me to stay sane in Chronic Town. It’s as if I must reconstruct my philosophy of living—and all the old truths no longer apply. Vacations used to entail engaging as actively and eagerly as possible with my new environment. Now I have to remember that staying alive and healthy during and after my vacation is more important. I’m trading toughness for sensibility—and I don’t quite like it.

Being sensible has meant that I’ve stayed behind while Andrew and Jay have gone off with my brother’s family. When they’ve gone swimming, walking, and to the Alpine Slide, I’ve remained in the dim guest room trying to regain the balance and energy that the drive drained. Being sensible has meant that I keep in mind the future—our future—rather than go blasting into the present as fast as I can. Being sensible means reminding myself that I’m still sick.

Resting certainly isn’t as exciting as zooming down the mountain-side slide with Jay and Andrew. But living for the long haul requires its own kind of toughness. Instead of physically pushing myself to the point of physical breakdown, I am emotionally requiring myself to think one step ahead. My new sensibility acknowledges that I do indeed have a future—on this vacation, when we get home, in my life with my family—and that I want to be as alive and as well as I can be for it. That’s pretty exciting after all.

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SharonMVsaid,

thank you for writing about your vacation. I think it’s been over six years since Dennis & I have been able to go on a trip. You are being wise, though it does hurt , I know to have limitations and to miss activities with your family. I don’t know if I’ll ever be able to walk in the woods, but I’d love to drive through some. A drive by the coast, a quiet hotel room, to do one tenth of what we used to do. Even then there were restrictions and limitations, but we had adapted and enjoyed what I was able to do (like shopping in the fun fiber , stamp & garden shops of one of our favorite central CA coast towns. Sometimes there was a walk after part of the day spent in the room. And all of this required extra meds, the tug of war between pushing so hard but not too hard. You can enjoy what you have now and what you will have in the future. I hang on to that. We will have our vacation too, one day.

Thanks for writing, Sharon. It is helpful to know that I’m not the only person in the universe who is trying to tiptoe around my illness wqhile trying to have a good time with my family. I am grateful that my health has improved enough for me to leave town. It is hard to figure out how much to push myself, as you said. Like so much else in Chronic Town, I guess it just takes practice!